Research attitudes, practice and literacy among Kenyan palliative care healthcare professionals: an observational, crosssectional online survey

Background: While research is needed to advocate for implementation of global agendas to strengthen palliative care, healthcare professionals’ research literacy must improve to bridge the gap between evidence and practice. A resurgent focus on North-South power disparities, means attention should also focus on understanding low- and middle-income countries’ local agency to implement palliative care research agendas. Methods: An observational, cross-sectional online survey among Kenyan palliative healthcare professionals currently working at any of the palliative and hospice care organizations operational during January – December 2019, using descriptive statistics. Results: Among the 93 survey respondents, participants were mainly nurses (50.54%; n=47). Regarding research attitudes: all agreed/strongly agreed research was important for their professional work. Over nine-tenths (91.21%; n=83) reported having the skills to conduct research, and 91.30% (n=84) wanted to conduct research in their clinical work. 90% (90.21%; n=83) reported supervisory support to conduct research. A comparable proportion (90.22%; n=83) would undertake research if they could find funding. Regarding research practice: over two-thirds (70.65%; n=65) reported ever having had a mentor who encouraged them to do research, while approximately half (50.59%; n=43) reported reading evidence-based journal articles about once per month and attending monthly in-house meetings on palliative care (56.79%; n=46). Regarding research literacy: while over two-fifths of respondents described their current research literacy level as ‘none’ or ‘beginner’ (44.56%; n=41), a comparable proportion described it as ‘intermediate’ (45.65%; n=42), with 9 (9.78%) stating it was ‘advanced’. Conclusion: The majority of palliative healthcare professionals report having interest, skills and support at work to conduct palliative care research, with a low-to-medium level of research literacy. The current study explored palliative care staff attitudes to, experience in, and literacy with the research process, which is necessary to creating a dialogue on implementing research findings. This study also adds to the global empowerment agenda, addressing inequities in research opportunities and local capacity to own and undertake palliative care research

Kenyan palliative care providers’ and leaders’ perceptions of palliative care research needs and support to facilitate rigorous research

Background: Palliative care (PC) can reduce symptom distress and improve quality of life for patients and their families experiencing life-threatening illness. While the need for PC in Kenya is high, PC service delivery and research is limited. Qualitative research is needed to explore potential areas for PC research and support needed to enable that research. This insight is critical for informing a national PC research agenda and mobilizing limited resources for conducting rigorous PC research in Kenya. Objectives: To explore perceptions of priority areas for PC research and support needed to facilitate rigorous research from the perspective of Kenyan PC providers and leaders. Methods: Focus groups (FGs) were conducted in November and December of 2018 using a semi-structured interview guide. FGs were audio-recorded, transcribed, and analyzed using a thematic content analysis approach. Results: Three FGs were conducted (n = 22 participants). Ten themes related to PC research emerged, including research on: 1) beliefs about death, disease, and treatment to inform PC; 2) awareness about PC, 3) integration of PC within the health system; 4) understanding caregiver experiences and needs; 5) community health volunteers (CHVs) and volunteer programs; 6) evaluation of costs and benefits of PC; 7) treatment approaches, including complementary and alternative medicine (CAM) and advanced diagnostics at end of life; 8) other suggestions for research, 9) populations in need of PC research; and 10) resources for enabling research. Conclusions: Kenyan PC providers and leaders identified key areas requiring increased scientific inquiry and critical resources needed to enable this research. These findings can help to focus future PC research in Kenya and encourage funding agencies to prioritize the issues identified

Conducting experimental research in marginalised populations: clinical and methodological implications from a mixed-methods randomised controlled trial in Kenya.

Experimental studies to test interventions for people living with HIV in low- and middle-income countries are essential to ensure appropriate and effective clinical care. The implications of study participation on outcome data in such populations have been discussed theoretically, but rarely empirically examined. We aimed to explore the effects of participating in a randomised controlled trial conducted in an HIV clinic in Mombasa, Kenya. We report qualitative data from the Treatment Outcomes in Palliative Care trial, which evaluated the impact of a nurse-led palliative care intervention for HIV positive adults on antiretroviral therapy compared to standard care. Participants in both arms attended five monthly quantitative data collection appointments. Post-trial exit, 10 control and 20 intervention patients participated in semi-structured qualitative interviews, analysed using thematic analysis. We found benefit attributed to the compassion of the research team, social support, communication, completion of patient reported outcome measures (PROMs) and material support (transport reimbursement). Being treated with compassion and receiving social support enabled participants to build positive relationships with the research team, which improved mental health and well-being. Open and non-judgmental communication made participants feel accepted. Participants described how repeated completion of the PROMs was a prompt for reflection, through which they began to help themselves and self-care. Participant reimbursements relieved financial hardship and enabled them to fulfil their social responsibilities, enhancing self-worth. These findings emphasise the importance of compassion, support and effective communication in the clinical encounter, particularly in stigmatised and isolated populations, and the potential of the integration of simple PROMs to improve patient outcomes. Participation in research has unexpected positive benefits for participants, which should be taken into account when designing research in similar populations. Researchers should be aware of the effects of financial reimbursement and contact with researchers in isolated and impoverished communities

PEPFAR Public Health Evaluation - Care and Support - Phase 2 Kenya

Phase 2 consisted of a longitudinal cohort study to measure patient-reported outcomes of care and support, a costing survey, and qualitative interviews to understand patient and carer experiences

Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures

BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G+Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis

Establishing Cohorts to Generate the Evidence Base to Reduce the Burden of Breast Cancer in Sub-Saharan Africa: Results From a Feasibility Study in Kenya

Purpose: By 2025, Kenya is estimated to experience a two-thirds increase in the incidence of breast cancer. Local research is necessary to generate evidence to inform policy, public health, and medical practice. There have been no longitudinal cohort studies in sub-Saharan Africa of women with and without breast cancer. Our aim is to assess the feasibility of conducting cohort studies in Kenya that consider clinical characteristics, socioeconomic factors, and self-care behaviors. Methods: We initiated a short-term follow-up cohort study of women with and without a diagnosis of breast cancer with baseline face-to-face data collection and one follow-up interview (at approximately 3 months by telephone). We developed tailored instruments to capture demographics, socioeconomic factors, breast cancer risk, ability to identify breast cancer symptoms, treatments received for breast cancer, and quality of life of survivors. Results: We recruited 800 women between the ages of 20 and 60 years and successfully collected baseline data. Completeness of the data was high for demographic variables, but there was a larger proportion of missing information for specific variables required for assessing breast cancer risk. Respondents were able to complete standardized instruments to assess breast cancer knowledge among those without breast cancer and identification of symptoms among survivors. We were able to successfully contact approximately 80% of the participants for follow-up. Conclusion: This short-term follow-up study provides evidence that women can be successfully tracked and contacted for follow-up in the Kenyan setting and offers lessons to establish future longitudinal cohorts to identify approaches to improve breast cancer outcomes

Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma

We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants' experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common

Patients\u27 and Caregivers\u27 Needs, Experiences, Preferences and Research Priorities in Spiritual Care: A Focus Group Study Across Nine Countries.

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. Design: Focus group study. Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs. Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research

Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

BACKGROUND: A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group. To inform replication and implementation, we have determined the active ingredients of the intervention and their mechanisms of action. METHODS: We conducted a randomised controlled trial (RCT) with qualitative exit interviews in HIV clinic attenders. The intervention was delivered over 5 months, with a minimum of 7 clinical contacts. Longitudinal quantitative data on components of care received were analysed using area under the curve and logistic regression. Qualitative data were analysed using inductive and deductive thematic analysis. RESULTS: Quantitative data analysis identified that intervention patients received more weak opioid, laxatives, discussion about spiritual worries, emotional support from staff for themselves and their families, time to talk about worries, discussion about future and planning ahead. Qualitative data analysis found that patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well-being. Integration of mixed method findings suggest that positive effect in quantitative measures of mental health and well-being are attributable to the active ingredients of: appropriate medication, effective health education and counselling, and having time to talk in clinical encounters. Mechanisms of action include symptom relief, improved understanding of illness and treatment, and support focused on articulated concerns. CONCLUSIONS: Routine care must provide opportunities and means for existing clinical staff to make routine appointments more person-centred. This approach enabled staff to identify and manage multidimensional problems and provide tailored health education and counselling. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT01608802 ). Registered 12th May 2012

Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care:A focus group study across nine countries

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/participantsSeparate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.ResultsA total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.ConclusionTo meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research